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The Nighttime World of Someone With Chronic Illness and Insomnia

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I’m lonely. I’m going to die too soon. I must write a will. I hope I don’t give my children my illness. I’m a terrible mother and a failure. How am I going to get everyone to school tomorrow? I hurt. I wish I didn’t hurt. Damn it, I forgot to put the washing on.

For too many nights of my life for the last couple of decades I’ve been an insomniac. Pain keeps me awake, but my active brain does a pretty good job of that, too. It’s dark, it’s lonely and I feel like there is no one in the world awake, even though logically this makes no sense. My mind plays tricks on me. I’m so very tired all the time but I just can’t switch off and let go. I have been through short phases of taking sleeping tablets, but even then I awake feeling groggy and like I’ve not slept for years.

The night brings out the anxiety in me; in the light of the day I can rationalize, but the darkness brings with it a gloom that is tough to shake. I worry. A lot. I don’t consciously think of anything, my mind just wanders from subject to subject always flitting about but generally ending up somewhere that I then consciously interrupt. Loss, sorrow, the future.

I read. A lot. Like many people who have chronic illness or any other condition that keeps them awake at night, I find that occupying my mind with fiction is better than the reality of laying there in the darkness, feeling every pain in my body and listening to my wandering thoughts. Instead I fill my mind with the words of others, following a journey that someone else has written. It’s escapism, pure and simple. Mostly it works, although sometimes I admit I find myself staring at the page, mind drifting to my last specialist appointment, my next challenge, my children and my life expectancy.

I try to survive another dark night. I’m scared to go to bed, frightened of the battle with my body and brain. I don’t want to lie awake all night yet again. I lay there wondering what I did to deserve this. I’m a good person, I’m kind and compassionate. I have made mistakes like everyone, but this? What did I do to deserve this? I wonder about karma and the many gods I read about. Why do I feel like I’m being punished? Why me?

I just want to lie without pain, and sleep without repeating the same battle with my body, mind and spirit each night. I do everything right, have tried every suggestion anyone has ever thrown at me, but none of it works. I just can’t sleep and the longer the battle rages, the darker the corners of my mind I find myself in, trying to escape.

The constant exhaustion that comes with being sick all the time is impossible to describe to anyone that hasn’t felt it themselves. It’s like the worst hangover you’ve ever had, after completing a marathon, while become the parent of a newborn for the first time.

It’s beyond tiredness.

Beyond having flu for a couple of weeks.

It’s relentless.

There is no end and the beginning was so many moons ago, it’s impossible to remember a time that you didn’t feel like this.

The fight with the dark feels impossible to win, night after night, battling to switch my brain off, trying so very hard to find that happy positive part I know is there, but has been lost as the sun sets.

Am I going to get worse? Will my heart stop beating? Will I slip away while I sleep? What will happen to my children? How can I save myself? What can I do to fix this?

I long for the rise of the sun, its warmth not only healing the world but my tired, aching body and brain. I begin to relax as the birds begin their day; I hear hope arriving once more with the daylight. My body finally gives up and my mind clears enough for sleep to find me for a few short hours.

I awake shortly after, groggy and heavy, my limbs weighed down and stiff as I fight to stand, smile and smash another day.

I’m alive.

I smile.

My day begins with the usual mayhem four children bring: noise, mess and madness. I remember why I don’t ever quit, why the darkness will never be strong enough to absorb me. It’s incredible the distraction from pain and your own irrational worries that children can bring.

I smile, again.

I’m alive.

I’m fighting.

I’m living.

The darkness may be strong, but I am stronger.

Originally published: September 17, 2016
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